A Woman's Journey With Rare Disease

Great Reminder of Leadership

My plans were kind of blown to smoke today as I wasn’t feeling super great. But it still had some bright spots.

I woke up to a kind message from one of my volunteer friends saying he appreciated the legacy I had left. He also mentioned how many people had mentioned me while they were all “Stomping the Hill” for TSC research very recently.

That was close to 14 years now maybe that I started that work, even though it feels more recent.

I didn’t build or carry forward that legacy alone, but it is nice to see that my efforts continue to be appreciated. I just did what I could for as long as I could hoping to do my best for others in that time within my means.

I’m proud of my volunteer friends who picked up the torch after I was forced to place it down to take care of myself. I didn’t ever do that work for the accolades.

I did it because there were people who needed that work to be done just as much or more than I needed to see it be done.

I did it to give back because that was important for me.

There was a family in Nebraska with TSC that we started communicating with when I was a junior in high school. Before that time, we really didn’t know anyone else with the disease (although we knew others were out there). At times, that was isolating.

So I could understand what it meant to other adults to meet & talk with me at conferences & other activities. I learned as much from them as they did from me. I still do.

At the time, it was how I made lemonades out lemons. A way to channel all that ugliness that my diseases were throwing at me into something positive.

If I’ve given that ability to someone else, I’ve been paid in return 10 fold.

In order to take my mind of another pain spike that reared its ugly head today, I watched 2 more episodes of House of Cards. (I set limits only because I didn’t want to blow through the entire season too soon. We’ll see how long that lasts before the urge to binge watch kicks in.)

But, being kind of sick & disgusted with the tweets & posts on all the debate cycles recently & needing a break from it, I took a page backward this evening to feed my inner history buff. I was glad I did.

I came across a very fascinating documentary about the 1972 election.

I wasn’t born yet, but I always was interested in this election because of the interesting historical times surrounding it.

Also because George McGovern is legend in my home state for obvious reasons. (His documentary is fascinating too.)

She is a fascinating woman. To me she stands out more than Hillary Clinton, Geraldine Ferraro, or Sarah Palin or any other woman who ran for high office.

Shirley Chisholm ran in that same 1972 race. It was also the race where George Wallace was shot. It was also the race where Richard Nixon would eventually win the presidency (again). Then (in the course of two years) destroy the trust in the U.S. Government irreparably & permanently.

Shirley Chisholm tread forth bravely in spite of this entire difficult climate, being up against a clearly (in-your-face) “old boy establishment” political system, dealing with Vietnam protests, & a sea of other democrats running against her for the nomination. It was a tough time for anyone to run for office, period.

Not once did she back down. She went forward in that race for as long & as hard as she could. She gave all those candidates a run for their money.

Not ever did she appear jaded or bitter. Even years after the fact. Even when people who should have supported her openly opposed her. Even with threats on her life while she ran.

She was a true public servant & spearheaded many programs like WIC that helped many families. She encouraged & offered internships to other young people that would have been passed over because of lack of political connections or other factors.

Above that though, she was a strong & authentic voice who truly cared about people & stood up for them. A real leader.

She didn’t have to win the presidency to leave an indelible mark in politics or government or to affect real change.

Her legacy & work reminds me that maybe if the impact of one’s work isn’t immediately felt, it doesn’t mean it isn’t important & that it won’t leave an impact eventually.

Even if some of the work one ends up doing only a few people remember, it’s still important & meaningful in the end (especially to those people).

What you do, no matter how great or small really does matter.

It makes an even greater impact when you do it sincerely because you know it needs to be done. Not for where or what it gets you.